Archive for piano compositions

Karly Elizabeth Wahlin passed away August 20, 2012 @ 2:24p. She was surrounded by her family. She will be so missed by everyone who loved her beautiful heart and spirit.

Lois Swope-Karly’s Mom and biggest fan.

This photo was captured by our neighbor Missy last week. She titled it “Karly’s Rainbow”

When her health decline significantly in February 2012 Karly wrote:

I am writing this in the middle of the night on February 15, 2012. I am so worn out. My body has struggled so much this past year and I haven’t had much of a break where I have felt great.

I can’t tell you how grateful I am for the ways God has used my life to bring understanding and hope to families affected by this terrible disorder of Rett Syndrome. I didn’t have much hope for my life as a little girl, enduring many years of struggle before I could communicate. But communicate I did, and to know that so many people have had their minds changed because of my story has brought great comfort to my final years.

Much of my family have been changed too and I feel glad for their love. Most of all, my deepest love and gratitude goes to my Mom for the life she gave to me through her devotion and continual sacrifices on my behalf. I have shared many times with her and Gregg that the day I die will be the greatest day and that I wish for them to remember that. I am free at last. I am free!!!!! I have so much joy in knowing my struggle will soon be done.

God is my best friend, and He has given me so much comfort to have endured disability and pain. But it’s been hard, so I hope that there will be a cure for the young girls who are coming into this world affected by Rett. I have never forgotten the joy Gregg has brought into my life by marrying my Mom. He has walked through many difficult times with us. My sister Leah has had a life that for many years I thought I wanted, but I’m so glad for the friendship we have had and the ways she has loved me through it all.

I hear my friends weeping and I only wish to say, please do not weep for me. I am so alive now. I have seen the other side and it’s so much more glorious than you can imagine. I am not eloquent. My brain is tired but my heart is content that my time spent in this world has not been in vain; that my music and words will continue to be used by God to change hearts and lives.

When I was asked if I could share a message today, I started praying, then I asked God for a message that would find a home in your hearts. I do not stand up here because I cannot stand without a stander. I do not speak into the microphone because I have no voice that you can hear with your ears. I am not on stage because I cannot see far with my eyes. I am not in front of you because it is hard for me to be visible because of movements I cannot control. I asked God for something that would be worth your time to share, because empty words are foolish.

About three months ago a pastor named Jeff Lexvold sent me an email asking if he could use my story and my music for a sermon he was preparing. I have a blog and he had read some of it and was very inspired by my story and noticed how much I write about joy and hope in spite of a very challenging life. He asked if he come to our home to meet me and my parents, so we did that. I felt so comfortable with him and respected the way he was going to share his message using some of my words. He titled his sermon “Lessons From Karly”. He shared it at our church in front of thousands of people. Many more people listened to the podcast of that message. I felt a little awkward, but fortunate that God could use my story to help other people. What I didn’t understand was how difficult that next month would be. I became so irritable with high anxiety, overwhelmed by life and had thoughts of death. I couldn’t drink, I couldn’t suck on my cup. I felt crazy!! And on top of that, I felt embarrassed that my life had been lifted up as an example of joy. I felt very overwhelmed. What we didn’t know at the time was that I was feeling that way because of a new medication I was given to manage my seizures. It was a terrible time for me and my family and I felt like I could never feel better again. I prayed and it felt like God had fallen asleep on me!! I asked for help and I couldn’t find it! The good news is that once I stopped the medication I started to feel better after about ten days, but what I experienced during that time was very dark. I imagine that some of you have felt those feelings…. I described that medication as “the devil in a bottle”!!!

Sometimes I feel like my life has become a burden to others. My care is very consuming for my family. I have many caregivers, many that are very great friends and some that have been with me for years. But I cannot go one hour without needing something from a caregiver or family member. It’s a life I would not have chosen for myself, but it’s the life I have been given, and I feel so glad for it, because this life is not just about me!! I don’t believe that God created my disorder. I believe that it’s something that happens to humans for reasons we do not understand, but the thing I want to have you know is, I HAVE A GREAT LIFE BECAUSE MY LIFE IS NOT DEPENDENT ON EASY DAYS OR HOURS, BUT ON MY RELATIONSHIP WITH MY GOD.

I’ve had many hard days. It has not been easy. I asked God for a reason to live, for a reason to struggle. He gave me my story. One filled with mystery, questions, trouble, hope and most of all, great love. I’m not living today because of my will, but because of God’s grace to me. He has made my life visible.

If you would have known me three years ago you would know how much has changed for me. I had graduated from high school with no place to go. The classes offered to me in school were a joke! They focused on things I will never be able to do. It was all tasks, not intellect, so I was very discouraged. I wanted to have more to do. I had never written or done public speaking. I couldn’t say a word. I never have!!! I didn’t think I had much to say but a neighbor and great friend, asked me if she could set up a blogpage for me and encouraged me to share. I didn’t know what a blog was! I had never heard of it, neither had my Mom!! But, we learned and now I am writing often. I’ve had over 82,000 people visit my blog from all over the world!! Drs, teachers, therapists, researchers and parents. People leave me messages from the Philippines, Korea, France, the Ukraine, England, Egypt, Istanbul Turkey, Australia. Places I will never go. My blog has been translated by others into many languages. God has brought my words to them and given them hope. I was not expected to offer anything of significance to this world. I was just going to require care my whole life…..but God had another plan!

I want to have you remember something: no matter how difficult our life is, no matter how low we feel, God is with us and only He can lift us up. He’s our one true friend. Our friend who knows our hurts, our limitations, our failures, our terrible thoughts and loves us anyway. LOVES US!!! I feel that in my bones, I NEVER doubt it. I pray everyday for vision, for that moment. I share everything with God. He doesn’t have a hard time understanding me. He gives my heart wings.

There are times in my life when I find that I don’t want to go on but then I see how much God has worked through me and how much we can do together, and I feel like my biggest gift back to God is to be His helper. I don’t have much that I can do physically, but I can write and I can pray and I can encourage; And I do that every day that I am able.

There will always be trouble in our lives. It’s not perfect here on earth. We cannot expect to have only trouble free days. It’s how we live in those hard times that matter. I have found the hardest days for me are the ones where I only focus on what’s right in front of me and I don’t think about the bigger picture of my life. If I only see the struggle, I will be defeated. But if I step back and ask God to give me a vision of my life from His perspective, I see how He has been there for me through everything. I have NEVER been alone!! I do not see that if I am focusing on myself.

I have never had an addiction. I don’t know what you struggle with everyday, but I know what it’s like to have my body need to do something desperately, that causes me harm. I drum on surfaces with my left hand. Even if I get slivers in my fingers, my compulsion to drum still happens. I can’t stop it. If I try really hard I feel very overwhelmed. Maybe that’s something like an addiction where your body craves something that if you give in, causes harm.

God has given each of us something to do no matter what our circumstances are. It’s not our limitations that stop us because God is bigger than our limitations. God is bigger than our worst struggles. He is bigger than any discouragement we might feel. We will have challenges and many of them may seem overwhelming to us. But God has proven to me that my challenges are Not a barrier for Him. I have the blessing of having people around me to remind me of that when I get discouraged by my struggles. Without encouragement from the right people our hearts become heavy, because life can be hard. It’s important to know that God is near. He is NOT far away watching us fail. He is close and wants to lift us up. Do not ignore the voice of a friend who knows God, who God has brought into your life to bring hope and healing. There is much to discourage us,…..but God is an encourager. He encourages our hearts. He encourages us to look around to see how we can bless someone else. The encouragement of a friend is NOT something to ignore. God brought them to you!

I want to share a poem with you that I wrote for my friends at our Bible Study Group. They have been the best encouragers. They come to our home with food. When my Grandpa was dying, they prayed with us. They check in to see how they can help. We have fun together. We talk of spiritual questions. We don’t ignore real concerns in each others lives.

When Time Stood Still

I saw my life stretching before me,

longing for connection with others

reaching for a hand, so elusive

asking questions not heard

I saw the awkward glances in my direction

hoping they wouldn’t expect

more than I could give

I begged God for someone who,

knew with their heart

someone who saw with their kind eye

who gave generously of their friendship,

seeing my contributions as enough

Hope restored is a powerful thing

giving strength where there was isolation

bringing friends into a circle warmed by

the fire of unity

I found you!

I have been blessed.

Karly Wahlin

November 2011

I would like to play my song, “When I Get to See You“. It brings me back to a time in my life that helps me remember, I am not alone.

I hope you find the truth that God put in your heart, to remind you of how He formed you. How He designed you is unique. It is not His purpose that you are like everyone else! I am one of the few women in the world with Rett Syndrome who can communicate. My ability to type was always wonderful to our family, but not as much to others. For the first ten years of my life I had no way to communicate. I couldn’t control my hands, I couldn’t speak, I couldn’t walk, I couldn’t point, my eyes couldn’t see well so I couldn’t stare at things like other girls with Rett do to communicate, so I was stuck inside my body!!! I felt so oppressed I wanted to die. I saw no reason to stay alive. I was little!!! I was a little girl and I felt that way! I didn’t have hope that it would ever change. But my Mom believed in me.

My sister and I would read books everyday with my parents. What they didn’t know at that time was that I was watching the letters as they read and I figured out how to spell by making the words out as I followed along. My sister and I were surrounded by books and music, so I was learning. I was intelligent and capable in my mind with no way to let others know. Even as I got older and demonstrated that I could type, many teachers and professionals said it wasn’t possible for someone with Rett Syndrome to type. They had made up their minds at that time that girls with Rett Syndrome were not very intelligent, that we lost our intellect along with our other abilities. That was NOT true!

I know that God gave me this ability to communicate for a reason and as I got older and now have a blogpage that people come to read from all over the world, I hear how hopeful they are for their own daughters who have Rett Syndrome: how much my story has given them encouragement to believe in the intelligence of their girls, and not to believe every professional who tells them that girls with Rett Syndrome are not able people. They look at my story and my life and tell me how I have blessed them by being honest about my journey. When I first started writing I had no idea that my life would have any impact at all in this world!! But now I have researchers and teachers and families and Drs coming to me and asking questions about Rett Syndrome.

It was not clear at the beginning how God would use my life to help anyone else other than provide a paycheck for them. What He has done through my music and my ability to type is a miracle! It is a MIRACLE!! I know you look at your life as very limited right now. I understand that, but you have a voice and you have a heartbeat and your life WILL be better. It will not always be a struggle to survive. On the days I feel great, I am full of joy. I try to remember everything about those days. It helps to remind me when I feel discouraged about who I am and to remember who God created me to be.

I wrote a poem a couple years ago that I recalled recently when I was really struggling. I asked my Mom to read it out loud to me to remind me of the strength I felt at the time I wrote it.

I am The Flower

I am the flower coming into bloom

I am a tree planted on a hill

I stand in spite of storms,

strong and free

I am a fire

Warming the hearts and souls of many

I give comfort in a world of cold stares

Karly Wahlin

November 16, 2009

I have found in my life that if I am willing to do the small things that God asks of me, that sometimes those little things can become big. Not because I made them big, but because God knew He could trust me with the small things and then gave me more. It is never about my ability, because if God only looked at what I am told I can do by my diagnosis, He would not expect anything from me. I am where I am today because God trusted me and I said “YES”, even if I was scared, even if I was terrified, even if it sounded impossible for me to do. I said “yes” because I knew He would make it possible. I’m not here to say that it was easy. I have really struggled because of my health weaknesses. But I am here to say that God made the impossible happen. He made a young girl who was not expected to do anything but wring her hands and chew on objects, and was given goals for many years in a row while she was in school, to sort shapes and match colors, and when she couldn’t even do that, was labeled “profoundly mentally impaired.” God took that. He took what was stolen from me through Rett Syndrome, and He gave me a life that only He could have created. I hope you remember my story when your day seems too hard and you remember most of all what God can do. He can make a dream come true that you didn’t even think was possible!

In the middle of a very hard time it’s hard to see where we are to go. But if God is guiding us we will end up in the place He wants us to be. Our paths on earth will not be easy. Mine have been very hard to bear sometimes, but when I know that God’s Holy Spirit is the one in charge, it makes the hard days easier. Sometimes we have made choices that cause the hard times. Other times things have happened to us that we had no say over. But if God is in charge, we will be ok, no matter how the hard times happened! If it’s because of our genetics, He is bigger than that! He can make something beautiful out of a big mess. He doesn’t need perfect people. He doesn’t need people who have always made great choices, or people who had perfect families. We don’t need to give up, we just need to trust God and allow the Holy Spirit to make something beautiful out of our messes. I hope when you remember my story, you remember that God has done something mighty in my life. I am an unlikely guest speaker, but God found a way. 🙂 Nothing is too hard for Him 🙂 Without my Mom and Gregg this would not have happened. They are the people that God has used to help His word get out and I am so unlimited because of what God has done through the three of us:)

I want to end by saying: I hope you don’t give up. That you remember, you are more than your current challenges. God has a purpose for your life that will strengthen you and give you meaning and give your struggles perspective. He has used my hardest days to encourage others and I am so glad for that.

I have been taking time to relax this week because I have been sick. I feel better and I am eager to share something today. In times when I am quiet, I think of things to write about. Today I feel up for writing.

11 years old

I have many memories of days when I couldn’t write, before I could communicate, before I could answer yes and no questions, not knowing if I would ever be able to do that. Today I am writing a message to myself, a message I would have wanted to hear when I was young and had no words to share with others. No hope that it would ever be different. Today I can write this letter. This is what I needed to hear.

Me at 9 years with Roxanne, one of my favorite people

My Dear Little Karly,

You see and can’t respond. You hear and cannot speak. You dream and cannot make those dreams come true. Your hope is long gone that these things will be yours. It is your life that is different than everyone around you. You do not get the same treatment in school that other students get. You hear people speaking to you like you are an infant. You cannot respond with something suitable to that kind of disrespect. There seems to be so little that is right for you. It seems so hopeless right now. Your life seems to hard to bear. It’s not the life you would have loved to live. There has been little to ease your worried mind.

It will not always be this way. You will have many things happen to you that you would not have chosen, but your life will be different than it is today. Rett Syndrome will be discovered and there will be answers for what happened to you. Do NOT fear your life. Do not fear what will happen. You will be loved in ways you couldn’t have imagined. You will be respected for what you can do, not pitied for what you are unable to do. You will have a voice. Your words will matter to many people.

Remember these days long enough to write down your experiences, then let them go. They are a heavy burden on your heart. But other families need to know what you have lived through. You will always have a place in this world. Even if it looks hopeless now, your life will make a difference and you will have opportunities to contribute to this world.

You will have joy. You will find peace when you are outdoors. You will discover a love of water and how much it will soothe you to spend time at the lake and watch the river boats on the St Croix. You have always loved music and heard many songs played in your home, but what you don’t know now is that you will compose music. You will have a voice through your music that others can hear with their ears. You will not know how many people will be blessed by your songs. But, most of all, you will be loved by God. You will have a blessed life. Not only for the things you can do, but because you are so loved by God and He will make your life worth living. He will give you peace in the many difficult days you will have. He will make the impossible happen. He will bring hope to a life that seems impossible to enjoy. Love will be the reason you are alive.

It will be possible for you to have hope. Don’t look at what you cannot do because that will discourage you. Look at what you are capable of. Much will be discovered yet. You do not need to be discouraged. For each difficult day you will have days that are incredible.

If you focus on the spiritual side of your life you will be free. If you focus on your body and your pain and your limitations, you will be in prison your whole life. In the end you will know how many people have been changed by your story, so don’t be fearful to share the truth. The truth will set you free and it will help bring understanding to a disorder that is so cruel.

When your life is finished here on earth you will have such joy in knowing that you did everything you could to help others have hope for themselves.

Find joy in the little things. They are often the biggest things.

You are loved deeply.

~

Me on my 1 year birthday

I want to end my blog by saying, I didn’t realize how hard this would be to write, but I am glad I did it. It’s important for me to remember, but not to focus on it too much. I hope my experiences in my life can be helpful to other Rett families today.

This morning I watched God work out a miracle. I will do my best to share some of it here. I have talked about how amazing it is to have a voice that others can hear through my music, poetry and written words. God worked it all together this morning into something so beautiful that it made grown men and women cry. I wasn’t expecting my heart to feel so full of joy but it feels so full I could run around and sing!! Since I can’t do that in my body I will try and do it with my words.

With Steve Burk at Minnesota Teen Challenge. He was so respectful to me.

The director of Teen Challenge heard some of my story and words that were shared at our church a few weeks ago when a visiting pastor used some of my blog and story to share his message. Steve thought that my story and words would inspire the students at Teen Challenge and asked me if I could be a chapel speaker. He gave me so much freedom to share whatever God gave to me. He didn’t direct my words or even suggest much, so I was given a lot of freedom to listen and pray and share my story.

I spent a few hours one day after I had prayed and wrote most of the message. I added some more to it over the next couple of weeks. I asked Gregg and Mom to help me make sure it was as clear as possible, but we didn’t change much of it. Today Gregg started the talk with his inspiring words and prayer and after we played the song that I love by Matthew West called, “The Story of Your Life”, my TV interview was shown. It’s a good way to introduce me because Maury Glover did a great job on my interview. Then my Mom went on the stage and read my words into the microphone to about 300 people. I sat in the front row with some dear friends who came to witness this wonderful event. Amy and I chatted on my keyboard and I felt so close to God. I watched how He changed hearts in that room.

I heard the crying and the encouragement and the tears mixed with laughter. I saw how God could use a silent young woman, unable to even care for herself, to change the hearts of people. I give God an A for this message!!!!! I thought it would be helpful to others, but the miracle for me was all the kindness and love and hope and encouragement that came to us afterward. People who felt discouraged were encouraged to keep pushing and trying and believing and dreaming with God. God knows who we are. We are no surprise to Him. Even our darkest thoughts are not hidden and we don’t have to worry that God would be surprised by us. God has dreams for every person. Those dreams are the truth, not what happens to us that causes us so much pain and disillusionment. If I only listened to what has been thought about me because of the diagnosis of Rett Syndrome, I would not have dreamed for a bigger life. But the one that God is working on for me is so much fuller and wiser and richer and more beautiful than anything my Mom or Gregg or I could have imagined. The tears I heard and saw and the stories shared with us today came from the hearts of very hurt people. Beautiful people. People that I hope never forget the miracle that God has worked out for me by giving me a voice that others can hear through His songs and His words. I hope I never forget how pleased I am in the this moment to be alive and working together with God to be His helper. I feel so blessed beyond words.

It’s a very peaceful Christmas for our family. I feel very eager to share this with others. I have not been writing on my blog because I have spent my time preparing for my chapel talk next week. I have been given 45 minutes to share whatever I am ready to share. I am going to share two of my songs and a couple poems, but mostly I want to leave them with hope.

I feel so much joy because my life has a purpose. I know that everyone has a purpose but many never find theirs. Part of my message is to be honest about my struggles. People often see only the good parts of our lives and not the real challenges. However for me, I can’t hide the real parts. They are visible to everyone. If it’s possible for me to feel a purpose, it’s possible for everyone. I don’t have an easy life, but I have a great life.

I never will know why people who have so few challenges live only for themselves. I have so much joy in helping others. I wish you peace and hope today.

Leah was home last week. She was sick while she was home, but we had a great time together. There was lots of piano music.

I felt like it was impossible for me to feel great again, last week. I was so unhappy that I thought it would be this way now. No matter what I said to myself I couldn’t feel hopeful inside. I was very afraid and it caused all kinds of trouble in my body with Rett Syndrome. I prayed, I talked with my Mom and Amy, I walked, I watched relaxing videos, I listened to soothing music, I went outside as much as possible, we went for long, relaxing drives, I listened to books on CD, I listened to sermons from church and nothing stopped how my brain was thinking. I felt so crazy!

I decided to share this today because I’m almost done now with the seizure medication that caused all of this to happen to me, and I feel great today! I never want to feel like that again. I would rather have a seizure than feel crazy. I don’t know if other people feel that way on their medication, but if any of my Rett friends do, I feel so sorry for them. I have never felt well on the medications that are suppose to stop seizures, but this was the worst. I think if I had to do it again, I would say No. My Mom had me decide if I wanted to try the medication and didn’t start it until I said, yes, it was time. I feel glad for that, but I feel really glad to be done. We are seeing my Dr next week to see if she has any other ideas. She wanted me to start anti-anxiety medication to stop how crazy I felt, but that made it worse.

I’m eager to say something: In my life I have had many hard days with Rett Syndrome. I have had days when I couldn’t stand to be in my body anymore, and I get discouraged. I pray a lot for those days so I don’t feel so alone in my struggle. I haven’t always felt joy in my life. There have been many days that I can’t imagine a harder life than the one I have lived for 26 years. But then days like today come and I see how beautiful life is and I see that I have not been alone, that God has given me a great gift. How He has used the hardest times in my life to give me understanding, courage and gratitude. I know that God doesn’t like Rett Syndrome. And I believe with all my heart that He didn’t create it. That it’s something that happens to humans for some reason we don’t yet understand. I believe that God has given me the ability to communicate my experiences for a reason, and today I am sharing some of those. Only God can make sense of Rett Syndrome. I’ve been surrounded by great, loving people. My Mom and I have been through some very painful days together. They have been hard on her. But today, our lives are better and our spirits are happy. We have many friends to thank for that. People who have entered our lives recently and people who have been here with us through much over the years.

I wanted to share one of my favorite songs that I composed when I was 16. This is one from my CD, In My Own Voice. It’s title is: For Real Friends.

I hope you enjoy it.

One of my favorite friends who has Rett Syndrome. I have so much joy when I am with her.

It is always a lovely day when we are together. Both of these sisters has Rett Syndrome.

This is where I wrote this today. Beau was very curious about all the equipment.

While I type my Mom reads my words into the recorder then she types them into my computer.

I wrote this today for a group of parents who have daughters with Rett Syndrome. It might help some people so we are going to post it on my blog.

My Mom has told me about this new group and that I could introduce myself when I was ready. Today is a good day and I am ready to tell you of my story. I hope that it helps you dream big dreams for your daughters who have Rett Syndrome. I am 26 years old. For most of my first 12 years we had never met anyone else who was like me. I didn’t understand what had happened to my body. It was a very hard life for many years. I suffered a lot of pain and I wasn’t given opportunities at school to show who I am inside. I lived with no way to communicate my needs or thoughts for 10 years. I was trying to tell my Mom and others around me that I was in here and wanted to be understood, but I couldn’t communicate that without extra help. I gave so much of my energy at that time. I was sad and scared and I cried a lot.

Since we had no idea about Rett Syndrome my Mom just kept trying everything she could think of. We read many books together with my sister who loves to read. We listened to books on tape, we listened to the radio and while my Mom played piano I sat on her lap and watched the keys. I loved music. We did this everyday until I was too big for my Mom to play around anymore. I haven’t had an easy life, but I have been surrounded by lots of love. My parents and sister are very musical and I was surrounded by many different kinds of music. I didn’t get much hope when I was in school but I got hope from my family. My mom believed in me and kept trying so many things to help me with my health and with my intelligence and with communication.

When I was 10 years old my Mom and I read about a man who lived in an institution most of his life. We read it together and I remember sitting so close to the words and watching my mom read the mans story and how he was able as an adult at 36 years old, to begin typing. His family gave him a chance and he was able to leave the institution. He even wrote a book. He needed help with his arm to type, because he couldn’t control much of his movements. But with the right kind of help, he showed that he was very intelligent and just waiting for someone to find out. I loved every word from his story!

My Mom didn’t know at that time that I had taught myself how to read by sitting on her lap and looking at the words as she read for so many years, and I figured out how to spell most words. So by the time I was given a typewriter, by a woman who believed in people like me, I could type words. I typed very slow. Many times I couldn’t type no matter how hard I tried because of my movements that I couldn’t control. But today, if you see me typing, you will see that I type very fast. I have been so fortunate. Much of my life has changed so much. I still struggle everyday with Rett Syndrome. There are times I can’t feed myself, times when hyperventilation and breath holding make my days really hard, times when seizures stop me, times when I have terrible headaches, or frustration I can’t control and anxiety that makes me feel crazy inside. Nights when I can’t sleep. Days when I can’t stop chewing, but with all of this I have a blessed life. I have a life that has great times in it. I am a speaker at times. I have written for a magazine. I have my own CD of music I have composed for piano. I am sitting here today with my miniature horse sleeping by my wheelchair. I have wonderful caregivers in my life, who have given me opportunities, because of their care for my body to be as healthy as I can be. I give them lots of credit because my family needs lots of help to care for me.

So today I hope you hear my story and are inspired to believe in your daughters. Because if you do, they will show you who they are and what they are able to do. Don’t believe that the tests are a good indicator of their intellect because the tests I was given in school show that I am profoundly mentally impaired. It’s not true and those tests caused me much trouble in my life. I can’t show you my intellect but if you believe that I have it, you will change most of all because you will try many things to help me become the best person I can be. That was my Mom’s belief and it worked for us. I have not forgotten everyday the sacrifices and struggles we have had.

Please don’t let Rett Syndrome be the only thing that is said of your daughter. It’s part of who I am but it’s not all that I am.

Love, Karly

I was so glad to meet Susan Norwell when she came to my house

January 2010:
I asked Susan Norwell if she would be willing to write something for me to put on my blogpage. She has worked for many years with people who are challenged with communication. I had a great visit with her last Fall. She and I have written to each other by email since then. I am excited that she believes in Rett girls. We need people like her to believe in our intellect and not get stuck on our inability to express ourselves easily.
Love, Karly
Dear Karly Bloggers,
I have been working with girls/women with Rett for almost 30 years. They have all taught be so much, that I wish I could go back and help those first two babies I worked with in 1980. I would have a lot more to offer them now. What I have learned, most importantly, is that Rett is definitely a motor disorder and the motor deficits that are affecting cognition is what we should be concerned about. Instead, professionals dwell on the “apparent” cognitive deficit (evidenced by the lack of motor response) and tremendously undershoot these girls.
I have lost count of the number of girls I have worked with, but this I know for sure….they are cognitively more capable than they are able to express and it is the lack of skill on our part that most hinders their development. So when I was asked to visit Karly to witness this young lady who was able to ‘Blog” and create music using FC, I was delighted and looking forward to learning something new from her.
For years I have utilized Facilitated Communication with my students with autism. I was trained by the original Biklen, Syracuse crew back in the early 90’s. I work hard to decrease support as soon as possible and many of my students have “proved” the typing is theirs by reporting experiences I did not partake in and by continuing to provide correct answers even after I shield myself from their choices. I never want to influence a student as that would be a dishonest portrayal of their abilities and would be unfair to all involved. I currently use FC with a young woman with Rett, who types more slowly than Karly, but clearly expresses her ideas and intentions using an AAC device called the tango!
Karly communicated via a keyboard facilitated by her mom. She was able to answer my questions and make appropriate comments throughout our visit. Her communication would sometimes halt as she lost the motor plan. In my professional opinion, this proved to validate her communication as those stops are consistent with the disorder. Karly had wonderful insights, a great sense of humor and spoke in a manner that is more like writing than typical speech. This is again something I have noticed with other students who use FC. They typically don’t use the slang we all do and are more precise in their communication, which is more similar to how we communicate in writing.
Karly is very blessed to have a mom that believes in her and others who support her communication and creation. There are so many girls who are not this fortunate and are still trapped by others’ low expectations. Please don’t leave any method, style or type of communication untried. We owe it to our “girls.”
Susan Norwell M.A.
Educational Specialist (Rett, Autism